Involving people in decisions about their care and treatment can improve outcomes and experience for patients, and potentially yield efficiency savings for the health system through increased prevention and supported self-care. NHS England has made a commitment to become much better at involving patients (and their carers) by giving them the power to manage their own health and make informed decisions about their care and treatment. The national patient experience surveys ask service users if they feel involved in decisions about their care and treatment.
A number of national patient surveys ask service users whether they were involved as much as they wanted to be in decisions about their care and treatment. It is useful to compare people's responses to understand how experience varies across NHS services.
Maternity Survey respondents were asked if they were involved enough in decisions about their care during labour and birth. They responded the most favourably, with 76% of respondents saying that they were definitely involved enough in decisions, and 5% saying that they were not. In contrast, only 53% of Community Mental Health Survey respondents said that they were definitely involved as much as they wanted to be in agreeing what care they would receive, and 8% of respondents said they were not involved but that they wanted to be.
Almost seven out of ten of Children and Young People's Survey respondents (parents with children aged 15 and under who had been admitted to hospital) reported that staff definitely involved them in decisions about their child's care and treatment. 64% of Emergency Department Survey respondents, 61% of GP Patient Survey respondents and 54% of Adult Inpatient Survey respondents stated that they were definitely involved as much as they wanted to be in decisions about their care and treatment. One in ten Adult Inpatient Survey respondents and Emergency Department Survey respondents said that they were not involved as much as they wanted to be.
The differences in responses between the surveys may reflect the demographics of respondents, as well as experience of services. For example, older people tend to respond more positively in surveys, and a higher proportion of inpatients are in older age groups compared with community mental health service users.
The percentage of Adult Inpatient Survey respondents who were 'definitely' or 'to some extent' involved as much as they wanted to be in decisions about their care and treatment remained stable at around 89% between 2012 and 2017. Those that were 'definitely' involved as much as they wanted to be increased over time, from 53% in 2012 to 56% in 2017, which was offset by a decrease in the proportion of respondents who said that they were involved 'to some extent'. There was almost no change over time in the percentage of respondents who said that they were not involved as much as they wanted to be.
Since 2014, Community Mental Health Survey respondents have been asked, "Were you involved as much as you wanted to be in agreeing what care you will receive?". Between 2014 and 2018, the proportion of respondents who answered, "No, but I wanted to be" increased from 6% to 8%. Meanwhile, the proportion who "definitely" were involved as much as they wanted to be decreased from 56% to 53%.
The OECD found that UK patients are more likely than average to report that their regular doctor involved them in decisions about care or treatment, but this declined from 91% in 2010 to 89% in 2016.
About this data
These indicators draw on data from the Adult Inpatient Survey, the GP Patient Survey, the Children and Young People's Survey, the Emergency Department Survey and the Maternity Services Survey.
For each Care Quality Commission survey, two weights were applied to the survey results data: a trust weight to ensure that each trust contributes equally to the England average, and a population weight, to make sure each trusts results are representative of their own sample and do not over represent groups such as older respondents. A combination of the two weights resulted in one single weighting which was applied to enable comparisons between years.
Note that data from the most recent survey publications were used for comparison. Our comparison across NHS services did not adjust for differences in survey populations; therefore, the results may not be directly comparable.
For more information please see NHS England, National Patient and Staff Surveys.